Preliminary tests of a new tool designed to measure stress levels among mesothelioma caregivers shows that the tool is both reliable and helpful.
The tool was developed by occupational medicine researchers in Rome. Their goal was to create a “short, flexible, and comprehensive tool” to detect psychological distress in carers.
The team recently tested the tool in a group of mesothelioma caregivers. Their results have just been published in the journal Psycho-Oncology.
The Strain of Caring for a Loved One with Mesothelioma
Malignant mesothelioma is a highly lethal type of membrane cancer. Most mesothelioma patients lived or worked around asbestos.
Pleural mesothelioma is the most common type of mesothelioma. It affects about 2,000 people in the US every year. Another 500 people receive a diagnosis of peritoneal mesothelioma.
Both patients and mesothelioma caregivers face stress and uncertainty as the disease progresses. Three is no cure and standard treatments are only moderately effective.
People with pleural mesothelioma gradually lose their ability to breathe freely. They may develop a cough and chest pain as tumors grow around their lungs. Patients with peritoneal mesothelioma can have gastrointestinal symptoms. They may have abdominal pain and trouble with digestion. Both types of mesothelioma are usually fatal within a year.
“Taking care of malignant mesothelioma patients is a stressful process that influences the caregiver’s physical, emotional, and social wellbeing,” writes researcher Michela Bonafede. Dr. Bonafede works for the Italian Workers’ Compensation Authority.
Mesothelioma Caregivers Need Support, Too
A number of studies show high levels of distress among mesothelioma patients and the people who take care of them.
It is always painful to watch a loved one decline. The fact that mesothelioma is so rare can make the experience even more isolating. There may be no other mesothelioma caregivers in the local support group. In addition, the lack of good treatment options can lead to feelings of hopelessness.
But the mental wellbeing of mesothelioma caregivers impacts patients. When caregivers feel supported and understood, they are better able to support their loved ones through treatment and beyond. That is the idea behind the Mesothelioma Psychological Distress Tool-Caregivers version (MPDT-C).
Developers started by reviewing the medical literature for studies on stressors among mesothelioma caregivers. They developed a 47-item questionnaire based on three major stress areas: Secondary Traumatic Stress, Engagement in Caring, and Meaningful Cognitive Restructuring.
They tested the tool in multiple Italian medical centers. The results show the tool is a good reflection of carer distress.
“Results suggest that the MPDT-C is a reliable tool with which to detect the psychological distress of this traumatized population,” writes Dr. Bonafede. “Our study offers preliminary evidence in support of the adequate psychometric properties of the MPDT-C, and these should now be replicated.”
Bonafede, M, et al, “Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool-Caregivers”, August 18, 2021, Psycho-Oncology, Online ahead of print, https://onlinelibrary.wiley.com/doi/10.1002/pon.5789